Cancer Clusters: Findings Vs. Feelings David Robinson Ashlee Dunston

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Cancer Clusters:
Findings Vs. Feelings
Prepared for the American Council on Science and Health
by David Robinson
American Council on Science and Health
Project Coordinator
Ashlee Dunston
Art Director
Yelena Ponirovskaya
President
Elizabeth M. Whelan, Sc.D., M.P.H.
March 2002
AMERICAN COUNCIL ON SCIENCE AND HEALTH
1995 Broadway, 2nd Floor, New York, NY 10023-5860
Tel. (212) 362-7044 • Fax (212) 362-4919
URL: http://www.acsh.org • E-mail: acsh@acsh.org
THE AMERICAN COUNCIL ON SCIENCE AND HEALTH (ACSH)
APPRECIATES THE CONTRIBUTIONS OF THE REVIEWERS
NAMED BELOW.
Michael Bracken, Ph.D., M.P.H.
Steven Rosen, M.D.
Yale University School of Medicine
Northwestern University Medical
School
Sir Richard Doll, M.D., D.Sc., D.M.
University of Oxford
George Ehrlich, M.D.
University of Pennsylvania School of
Medicine
Gilbert Ross, M.D.
Medical Director, ACSH
Wallace Sampson, M.D.
Stanford University School of
Medicine
Sander Greenland, Dr.P.H., M.S., M.A.
UCLA School of Public Health
David Schottenfeld, M.D., M.SC.
Clark Heath, M.D.
University of Michigan School of
Public Health
American Cancer Society
William Jarvis, Ph.D.
Loma Linda University Schools of
Medicine and Public Health
Alan Kristal, Dr.P.H.
Fred Hutchinson Cancer Research
Center
Michael Simon, M.D., M.P.H.
Barbara Ann Kamanos Cancer
Institute, Wayne State University
Mark Utell, M.D., University of
Rochester Medical Center
Elizabeth Whelan, Sc.D., M.P.H.
President, ACSH
ACSH accepts unrestricted grants on the condition that it is solely responsible for the
conduct of its research and the dissemination of its work to the public. The organization
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organization under Section 501(c)(3) of the Internal Revenue Code—are tax deductible.
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Copyright © by American Council on Science and Health, Inc.
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Table of Contents
Executive Summary
5
Introduction
6
What Is A Cancer Cluster?
6
How Common Are Cancer Clusters?
7
Why Are Investigations of Potential Environmental Cancer
Clusters So Often Inconclusive?
The Bull’s-eye Problem
9
9
Public Pressure
11
Problems with Data Collection
13
Chance
15
Geography as Symptom
15
Proving a Negative—Never Say “Never”
15
A Case in Point—Long Island and Breast Cancer
16
Conclusion
20
A Checklist: ACSH Recommends
21
References
22
Executive Summary
The issue of cancer clusters, which has been in the spotlight
recently, is plagued by a wide disparity between public perceptions
and scientific findings. Movies like Erin Brockovich and A Civil
Action have led the public to think that industrial pollution in the
environment is causing local “cancer clusters” where cancer cases
are more prevalent due to cancer-causing chemicals.
There are many scientifically documented instances in which
chemical exposure has caused cancer in humans, but these have
generally not been purely environmental. Contamination in the
water supply or air causing residents of a neighborhood to develop
cancer, although popularly thought to be a common occurrence, has
rarely been documented through scientific investigation. Instead,
the clusters that scientists have been able to attribute successfully to
a particular cause have been occupational—such as workers in a
factory developing a particular type of cancer as a result of exposure to one of the chemicals they handle every day—or have been
linked to a particular medicine, or to behaviors such as smoking or
sunbathing. The evidence for environmental contamination causing
cancer, however, is sparse. There is some indication that chemicals
dissolved in drinking water may elevate the risk of gastrointestinal
and bladder/urinary tract cancers, and that living next to a smelter
or other “point source” of air pollution may elevate risk of lung cancer. The many efforts that have been made to demonstrate links
between other types of cancer and environmental contamination
have not conclusively identified such links.
Science does not support the popular image of traces of chemical
contamination elevating the cancer risk of everyone who lives in a
neighborhood regardless of where they work, what sort of lives they
lead, and what hereditary influences may predispose them to cancer.
The absence of conclusive scientific evidence in this area may be
partially explained by the myriad challenges that bedevil cancer
cluster investigations—challenges that are explored in this report.
This report discusses the potential cancer clusters in Toms River,
New Jersey and Long Island, New York, because they contain many
elements typical of cancer cluster investigations and have received
considerable media attention.
5
Cancer Clusters:
Findings and Feelings
Introduction
The fear that industrial pollution, present in trace amounts in the
environment around us, may be causing “cancer clusters”—local
areas where cancer is more prevalent as a result of cancer-causing
pollutants—has received a great deal of attention recently. Films
such as Erin Brockovich and A Civil Action have helped bring clusters to the forefront, and community concern over possible clusters
has led to congressional mandates, federal investigations, and an
increase in public sensitivity to the issue. In this report, ACSH provides a concise introduction to the issue, to help journalists, public
officials, and members of the public understand both the science
and the beliefs that drive the discussion.
What Is a Cancer Cluster?
Cancer clusters are a frequent topic of media attention, and have
come to have two different meanings, one for the public and one
for scientists. While the public typically thinks of cancer clusters in
terms of cancer caused by industrial pollution, scientists tend to see
the issue differently. Robert N. Hoover, M.D., Sc.D., Director of the
Epidemiology and Biostatistics Program in the Division of Cancer
Epidemiology of the National Cancer Institute (NCI) defines a cancer cluster as a geographic area, time period, or group of people
with a greater than expected number of cases of cancer.1
Epidemiologists—scientists who study the causes and distribution
of human diseases—expect cancer rates to vary slightly from year
to year and use statistical tests to determine whether or not a given
rate is different enough from the average to qualify as unexpected.2
Proving that a cluster exists entails a rigorous statistical analysis, in
which the number of cases observed in some area over a specified
interval of time is compared to the expected number of cases for
that time period and area.
Scientists can use clustering as a way to learn about associations
between cancer and any external agent, not only pollutants. For
example, much of the scientific literature on clusters involves the
evaluation of hypotheses that attribute the spread of cancer to infectious agents. The U.S. Centers for Disease Control and Prevention
has conducted cancer cluster investigations for over 20 years.
6
G. Caldwell, of the Arizona Department of Health Services, reviewing this body of work, explained that “the original plan was to
investigate such clusters to determine if they were a phenomenon
indicative of cancer transmissibility.”3 Likewise, the 1982 edition of
Schottenfeld and Fraumeni’s authoritative textbook Cancer
Epidemiology and Prevention begins its chapter on clustering by
explaining that it is “especially directed towards examining more
localized variations in the incidence of cancers in space and time
that might suggest that the cancers are induced by infectious
agents.” 4
The realization that smoking elevates the risk of lung cancer is
described in much of the early (pre-1970) scientific literature as an
analysis of clustering—nations and areas with more residents who
smoke evince higher rates of lung cancer. Such instances demonstrate that the term “cluster” can be used on a very large scale, to
refer to an elevated incidence of cancer in the entire population of
one nation as compared to that of another, or to similarly large
groups. It is more commonly used, however, to describe elevated
rates in more localized areas, such as a single town or neighborhood.
The public and the media, on the other hand, often use the term
“cancer cluster” in a more general way. When members of a community believe that the number of cancer cases in their community
is abnormally high, they will often seek an explanation for the “cancer cluster.” The media may then report on efforts to explain the
cluster, before a statistical analysis has verified that the rates of cancer in the community are actually elevated. Thus, the term “cancer
cluster” is often used by the public and the media to refer to the
perception of an elevated number of cancer cases, and by epidemiologists to refer to confirmation of this perception. The community
perception may reflect an elevated rate of cancer, or it may not.
How Common Are Cancer Clusters?
Scientists and researchers have verified a number of cancer clusters. Diethylstilbestrol (DES), a drug used during the 1940s and
1950s to prevent premature labor in pregnant women, is the cause
of one such cluster. Because a prestigious group of Boston physicians advocated the use of DES, many of the women who used it
7
Cancer Clusters:
Findings and Feelings
lived in the Boston area. Fifteen to 20 years after these women had
used DES, doctors noticed a miniature “epidemic” of vaginal cancers among their daughters. The specific form of cancer observed—
adenocarcinoma—is so rare that the hospital where eight of the
daughters were treated within the space of a few years had never
encountered any cases of it before. Physician concern over the cancer led to an investigation that linked the vaginal cancers to DES.5
Most observers might not call this a “cluster” because it does not
involve supposedly carcinogenic conditions in the environment
where people live, but it is considered one by epidemiologists since
a large number of rare cancers in one area (Boston) prompted the
study.
Other cancer clusters have been found in occupational settings.
One example concerns the material polyvinyl chloride (PVC), more
commonly known as vinyl. PVC is one of the most widely used
synthetic compounds in the world. It is an important material for
construction and siding, a common insulator of electrical and other
wiring, and a common material for making shower curtains. At factories around the world, workers were exposed to very high concentrations of one of the ingredients used to make PVC, a volatile
chemical known as vinyl chloride monomer (VCM). VCM is not
used directly by the public, but it is a key part of the PVC manufacturing process. The workers who handled VCM, it was observed,
had elevated prevalence of a rare liver cancer, hepatic angiosarcoma. Rigorous investigations eventually proved that VCM elevated
the risk of hepatic angiosarcoma in these factory workers.6
The public expresses concern over many possible clusters each
year. In most cases, the perceived increase in the prevalence of cancer that has generated alarm is not in fact an increase in prevalence
at all. According to public health officials, 85 percent or more of
the possible clusters reported to them by concerned community
members are in fact not statistically significant elevations of cancer
rates.7,8 Many of these supposed clusters include whatever types of
cancer have been diagnosed in the area. This ignores the reality that
different cancers are really different diseases.
As noted, cancer clusters have been reliably linked through controlled studies with specific medicines, like DES, and with occupational exposures to chemicals like VCM. Scientific findings do not,
however, match up with public perceptions about localized elevations in prevalence of many different cancers as a result of industri-
8
al pollutants in the environment. To quote from the most recent edition of Cancer Epidemiology and Prevention, “Overall, there are a
sufficient number of point source studies to conclude that excess
lung cancer risk was very likely caused by large, relatively uncontrolled sources of community air pollution, particularly arsenicemitting smelters…. However, the risks for community exposure
are likely to be quite small, between 1.5 and 2.0 [times the normal
rate] and will require substantial study populations and careful
assessment of other known lung cancer risk factors.”9 Thus, ambient
air pollution in non-occupational settings may be linked to lung cancer—not to the wide range of other cancers for which it is often
blamed. At present, lung cancer is the only cancer that has been scientifically tied to ambient air pollution.
As to pollution in drinking water, the evidence is similarly lacking compared with public fears. There is a complex mixture of trace
elements present in drinking water, usually at levels of 10 or fewer
parts per billion. Cancer Epidemiology and Prevention reviews several suggested cancer links—including possible carcinogenic effects
of arsenic and organochloride compounds with bladder, GI tract,
and other cancers. It does not identify any chemicals about which
the body of evidence is large or consistent enough to support the
conclusion that they increase cancer risk in the amounts that are
present in U.S. drinking water.10
Some clustering should be expected as the result of chance
alone.11 Wherever this chance clustering occurs, it is reasonable to
expect that people will want to know why it has happened—and
equally reasonable to expect that no cause will be found.
Why Are Investigations of Potential Environmental
Cancer Clusters So Often Inconclusive?
The “Bull’s-eye” Problem
A variety of factors often work together to create the appearance
of a cluster where nothing abnormal is occurring. Looking for clusters is analogous to drawing a bull's-eye after you have thrown darts
at the wall at random. In this situation, there is possibly a place in
which a bull's eye can be drawn that will leave multiple darts in
9
Cancer Clusters:
Findings and Feelings
close proximity to some common center. According to the
American Cancer Society, cancer will be diagnosed in an estimated
1,268,000 Americans in 2001.12 Finding clusters in cancer data is
thus something like looking for patterns in the location of over a
million darts thrown at a dartboard the size of the United States.
The definition of what geographic area is to be investigated in a
cancer cluster study is often problematic. If the hypothesis that cancer rates in a certain area may be elevated provides the initial impetus for the study, the natural temptation is to study only the area
that includes the cases that inspired the study. This problem is
called “pre-selection bias” because it involves researchers preselecting the geographic area of a study based on what they already
know an investigation of certain areas would reveal. In much the
same way as gerrymandering—to include certain voters in an electoral district—can shape the outcome of elections, pre-selection
bias—to include certain patients in the geographic area of a study—
can shape the outcome of cancer cluster investigations.
The problem of “drawing the bull’s-eye” applies not only to
space, but also to time. A study of two clusters in one Ontario town
noted that “…the tendency is to include all years in which cases
were reported [in the date range chosen for analysis], thereby maximizing, and magnifying, any effect which may be present.”13
A third way in which the bull’s-eye problem can skew results is
in the selection of which cancer to include as part of a possible
cluster. In the case of possible pediatric cancer clustering in Toms
River, New Jersey, investigators began by looking at every category
of childhood cancer and included in their investigation those categories of cancer whose rates were significantly elevated in Toms
River.14 The threshold of significant elevation that was used meant
that for every twenty cancer categories examined, one would qualify as significantly elevated.
These sorts of expansions are problematic because the greater
the number of possible cancers, areas, and time periods that are
evaluated as potential clusters, the greater the chance that randomly
distributed cases will appear as a cluster. In addition, the links that
have been proven between exposure to carcinogenic chemicals and
elevated incidence of cancer have entailed elevated rates of
extremely specific cancers: DES, in high doses, elevates risk of
vaginal adenocarcinoma, exposure to VCM elevates risk of hepatic
angiosarcoma. One thing these documented instances of elevated
10
prevalence have in common is that the chemical agent consistently
elevates risk of a specific cancer, not of all cancers equally.
Often in these debates, however, a burgeoning set of effects is
putatively linked to a single cause. This is aptly illustrated through
one of the most widely publicized cancer cluster cases in recent
years, the Erin Brockovich case. Dramatized in a major film with
Julia Roberts portraying Ms. Brockovich, an overworked paralegal,
the case dealt with the release of chromium-6 into the Hinkley,
California water supply by Pacific Gas and Electric. The suit
blamed the chemical for dozens of symptoms, from nosebleeds to
breast cancer, miscarriages, Hodgkin’s disease, and spinal deterioration.15 Workers who inhale large amounts of chromium-6 over long
periods have been shown to be at elevated risk of developing lung
and sinus cancers. But chromium-6 has never been shown to be
related to any other human cancer, or to be carcinogenic to any
degree when dissolved in drinking water.16
Public Pressure
Sometimes, public pressure can impel public health officials to
undertake an investigation they do not believe is warranted.
Investigations undertaken after experts have concluded that nothing
out of the ordinary is occurring are unlikely to produce noteworthy
results.
Community members who raise concerns about possible clusters
will frequently explain themselves in terms of a “common sense”
feeling that something is wrong. Often, they are not inclined to wait
patiently for an in-depth, methodical investigation by public health
authorities.
An investigation into childhood cancer in Toms River, New
Jersey, provides insight into the pressures that can work against balanced scientific inquiry. Toms River is the location of two
“Superfund” sites, places the Environmental Protection Agency
(EPA) has designated as a high priority for clean-up due to the presence of hazardous waste.
A nurse in a Philadelphia pediatric oncology ward noticed that
many of her patients were from the Toms River area, and speculated
that an environmental cause might be elevating the pediatric cancer
rates in Toms River. When parents brought their concerns to the
attention of state authorities, in 1996, the state evaluated the cancer
11
Cancer Clusters:
Findings and Feelings
rates and found no cause for alarm. A spokeswoman from the New
Jersey Department of Health explained that the state, based on
existing data about cancer rates, did not think a comprehensive
cluster investigation would be economical or useful, because the
numbers of childhood cancers were “not statistically meaningful.”17
Nonetheless, the state moved to address community concern
with a series of investigations into possible sources of cancer risk,
including the Superfund sites. The parents brought a sense of
urgency to the discussion. “This is a terrible disease, and these kids
suffer…. These kids don’t have time to wait. I have two other children, and I’m scared to death,” said one mother of a childhood cancer victim.18
“In my heart and in my mind, I have no question. Now, it's up to
the scientists to use logic and common sense to get at the truth,”
said Linda Gillick, chairwoman of a citizen's committee organized
to address the issue and the mother of another cancer victim.19
Where parents were certain, scientists were not. The data on
cancer rates that was available when community members first
raised concerns did not show more cancer than scientists might
have expected to be found in a random distribution in Toms River.
Residents prevailed on their congressional representatives to ask
federal officials for an investigation that state health officials said
would be futile. 20 Ultimately, the study was undertaken as a joint
effort between state officials and the federal Agency for Toxic
Substances and Disease Registry.21
As part of her group’s effort, Linda Gillick traveled to
Washington, D.C. to defend a special line-item allotment of $1 million for the Toms River study in one of Congress’s annual appropriations bills.22 Ultimately, Congress passed the item.
Concerned citizens thus had a doubly decisive impact on the
issue. After convincing Congressional representatives to circumvent
state cancer experts and launch a federal investigation, the citizen
activists intervened again to increase the funding for the study over
the amount allotted it in the normal budget process. At both junctures, public concern and fear overrode the decisions of administrators charged with setting public health priorities based on scientific
findings.
The study, which took more than five years to complete, concluded that “no single risk factor evaluated appears to be solely
responsible for the overall elevation of childhood cancer incidence
12
in Dover Township.”23 The study found that most of the childhood
cancer cases in the area have no explanation; the only supportable
environmental link was that between prenatal exposure to contaminated drinking water and pediatric leukemia in girls.
Dr. Eddy Bresnitz, a New Jersey state epidemiologist, explained
that even the narrow relationship found in the study might be a
fluke. “Due to the relatively low number of study subjects and other
factors, chance cannot be excluded as a possible explanation for the
findings.”24
“You can't have a child with leukemia living two houses down
from a child with a tumor, drinking the same water and breathing
the same air, and tell me they didn't get cancer from exposure,”
Linda Gillick told the New York Times. “That's my common sense
speaking.”25
Problems with Data Collection
Scientific studies linking elevated cancer risk to environmental
causes have generally involved years-long latency periods between
exposure to carcinogenic factors and development of cancer. The
DES cases did not become obvious until more than 10 years after its
use, and exposure to VCM in vinyl plants takes years to cause cancer. Even smoking and sun exposure, the two most widely documented avoidable cancer risk factors, can take half a lifetime to
make their effect apparent. The latency problem surfaces in two
ways in community-inspired cancer cluster investigations.
First, some of the people who were exposed to the environmental
chemical under investigation may have moved away from the area
before the investigation began. If they subsequently develop cancer
in their new homes, their absence diminishes the perceptibility of
the cluster. If they remain healthy, their absence from the area effectively increases the apparent magnitude of the cluster.
Second, it is possible that some of the cancer cases that occur
within the investigated area may not be attributable to the local
environment. If some of the people who are diagnosed with cancer
moved into the area shortly before being diagnosed, steps must be
taken to assure that their cancer cases are not attributed to local
causes.
The most significant problem plaguing data about possible cancer cases is that cancer is typically not a reportable disease. The
13
Cancer Clusters:
Findings and Feelings
government keeps extensive, complete records of the incidence of
many infectious diseases—such as tuberculosis and venereal disease—in order to track and counter potential outbreaks. For cancer,
however, no such record exists. Recently, several states have begun
statewide cancer registries. These are helpful to some degree, but
they lack historical data, are plagued by physician compliance problems, and may not be able to keep accurate account of diagnoses
made out of state. This last issue is particularly problematic, since
many definitive cancer diagnoses are made at major medical centers for patients who come from out of state in search of top expertise.26
In the absence of reporting requirements, the NCI runs a program called SEER (Surveillance, Epidemiology, and End Results),
which documents cancer prevalence in a sample of the U.S. population to determine the baseline levels of various cancers. The program uses information from hospitals, pathology laboratories,
physicians, and death certificates to determine who has cancer, supplemented by population surveys. The SEER program has been in
operation since 1973 and has quality control procedures in place
that maximize the accuracy and completeness of its results. In addition, many states provide additional support for the maintenance of
cancer registry information beyond that provided by SEER.
These programs are helpful, but long-term historic information
about cancer incidence is only available for some parts of the country. The population surveyed by SEER —a subset of the total US
population—is designed to be a representative sample of the national population. If the local area in which a cancer cluster investigation is conducted differs demographically from the national population, the expected cancer levels established by SEER may not apply
to the area being studied.
The data collection problem is significant because the only way
to determine whether or not the cancer rate in a community is
abnormally high is to compare it to an expected rate. Expected rates
determined with reference to populations different from the one
under study in the area of a potential cluster may not provide a reliable guide as to how much cancer should be expected in the area
under study.
14
Chance
As discussed above, the nature of random distributions is such
that some amount of clustering may be expected to occur simply by
chance. It is conventional among scientists to regard an elevated
cancer rate as “statistically significant” if chance alone would produce as much or more elevation less than 5% of the time. This is
commonly written in the scientific literature as “p<0.05”, where p is
the probability of seeing such an elevation if only chance is at work.
With this criterion, if one examines the cancer rates in 100 neighborhoods, and cancer cases are occurring randomly, one should
expect to find about five neighborhoods with statistically significant
elevations.
Any unusual amount of cancer will tend to provoke concern,
regardless of whether it stems from chance or a more concrete
cause. As a result, the finding that there is a substantial elevation in
cancer rates suggests that further investigation into possible causes
may be warranted, but does not in itself establish that any particular
cause is at work.
Geography as Symptom
When a group of people who live in geographic proximity to one
another exhibit an elevated rate of cancer, the rate may reflect characteristics other than geography that those in the affected area share.
Characteristics like similar diets and exercise patterns may tend to
be geographically “clustered” because low-income people who eat
disproportionately more fatty foods live near one-another, because
health-conscious suburbanites live in the same neighborhood, or
because rates of smoking tend to differ from one community to the
next. In any of these cases, a geographic cluster might be proved to
exist even if there were no chemical carcinogen in the environment.
Proving a negative—Never Say “Never”
No matter how many possible environmental cancer causes are
contemplated, it will always remain possible that some heretofore
ignored chemical in the environment is elevating cancer rates. Thus,
investigations of possible environmental causes for cancer can be
15
Cancer Clusters:
Findings and Feelings
extended almost indefinitely, as more and more possible carcinogens are examined.
For all these reasons—the many ways in which a “bull’s-eye”
can be drawn, problems of latency, the lack of reportability of cancer, the similar behaviors and backgrounds of people who live near
one another, and the vagaries of chance—investigations into proposed environmental cancer clusters are unlikely to confirm environmental hazards as a source of human cancer.
A CASE IN POINT—LONG ISLAND AND BREAST
CANCER
One example of how science can be overtaken by public concern
can be found in the ongoing investigation of breast cancer rates on
Long Island. Several advocacy organizations have sprung up to
urge public health authorities to take action regarding a perceived
breast cancer “epidemic.” The oldest of these groups is 1 in 9: The
Long Island Breast Cancer Action Coalition. Operational since
1990, 1 in 9 (along with the similar groups that have since been
created) serves as a highly effective force in the public debate. 1 in
9’s website explains: “We have organized and participated in trips
to Albany and Washington to educate our legislators about the need
for action that will help prevent the breast cancer epidemic.” 27
1 in 9 has tenaciously supported the idea that industrial pollution
is elevating the rates of breast cancer on Long Island. Geri Barish,
the group’s president, wrote an instructive editorial in response to
claims that her group was doing more to stoke fears than to support
science:
As activists, we are motivated by an absolute and
unflinching commitment to examine every possible scenario for the unacceptably high levels of cancer in our
midst. While we recognize that many factors, including
genetics, diet, and poor health practices contribute to the
rates of the disease, we believe that industrial chemicals,
such as pesticides and other environmental contaminants,
may also play a role.28
16
One breast cancer victim, voicing concerns typical of those
recorded by news media, seems convinced that pesticide use on
neighboring lawns caused her cancer. Noting that her neighbors
want “their lawns green and bug-free,” she feels the fact that three
women on her block have died from cancer is “not a coincidence. It
can’t be.”29 Concerns like these highlight the quandary in which
public health officials find themselves—they cannot, no matter how
much they investigate, prove that the elevated rate is a coincidence,
even if that is the real explanation, because it is not possible to
prove a negative.
Ms. Barish and her colleagues do not appear to consider it a possibility that, when known breast cancer risk factors such as Jewish
ethnicity, bearing a first child later than usual in life, socioeconomic
status, early age at menarche, and late age at menopause are considered, the rates of cancer on Long Island might be no higher than
should be expected. Geography might be symptom rather than
cause, because people who live on Long Island tend to share other
characteristics beyond area of residence. Any cancer, anywhere,
deserves the attention of medical professionals. The question is
whether the number of breast cancer cases on Long Island suggests
that Long Island should get more attention than other localities,
breast cancer more attention than other diseases, or the environment
more attention than other potential risks. The answers to these questions might be no—a possibility that 1 in 9 does not consider.
1 in 9’s legislative activism, combined with that of other Long
Island breast cancer groups, succeeded on June 10, 1993, when the
U.S. Congress passed a bill mandating an investigation into possible
environmental causes for breast cancer on Long Island by the NCI.
The bill, which was supported by then-New York Senator Alfonse
D’Amato, explicitly required the NCI to examine five possible environmental risk factors—“contaminated drinking water, sources of
indoor and ambient air pollution, electromagnetic fields, pesticides
and other toxic chemicals, and hazardous and municipal waste.”30
Thus, the power of public pressure was responsible for getting an
investigation launched. This intervention by activist groups is often
counterproductive because it has the effect of circumventing the
normal mechanisms that guide scientific inquiry. By creating a narrowly tailored federal mandate to investigate putative environmental
causes of breast cancer, advocates and legislators have taken over a
task for which scientists are the most qualified—deciding how lim-
17
Cancer Clusters:
Findings and Feelings
ited research and public health dollars ought to be spent.
The Long Island breast cancer issue also provides a demonstration of the “bull’s-eye” problem. An article in Newsday entitled
“Waiting for Science Can Cost Lives” celebrated the day when “the
determined and creative women of Long Island went door-to-door
and began plotting cases of breast cancer in the area.”31 As discussed above, the increased scrutiny to which the area under study
is subject may create an inaccurate impression of an elevated cancer rate.
The mandated investigation, called the Long Island Breast
Cancer Study Project (LIBCSP), is ongoing. The findings released
thus far, available to the public at the Project’s website,32 do not
seem to bear out the fears of community activists.
One of the questions at the core of this debate is whether or not
breast cancer rates on Long Island are elevated at all, and if they
are, whether or not this elevation can be explained in terms of nonenvironmental risk factors like those outlined above. The LIBCSP
has just released a comprehensive Geographic Information System
designed to help researchers investigate the situation. Meanwhile,
using already available tools, a group of researchers at the NCI
completed a study, “Breast Cancer Clusters in the Northeast United
States: A Geographic Analysis.”33 Taking pains to avoid the bull’seye problem discussed above, the researchers used a computer
modeling system to scan the study area for significant clustering.
They found that “there is a statistically significant and geographically broad cluster of breast cancer deaths in the New York CityPhiladelphia, Pennsylvania, metropolitan area” and noted that within this large cluster are four smaller clusters, each significant in its
own right—Philadelphia with suburbs, central New Jersey, northeastern New Jersey, and Long Island. The researchers explain: “The
elevated breast cancer mortality on Long Island may be viewed less
as a unique local phenomenon and more as part of a more general
situation involving large parts of the New York City-Philadelphia
metropolitan area.” This study thus confirms that rates on Long
Island are elevated, but does not do so in a way that lends support
to theories about localized pollution causing cancer, since it examines such a broad area. Whether the use of pesticides in a neighborhood, or proximity to power lines or to a factory (or any similar situation) is responsible for the elevated rates cannot be determined
from a study that considers such large aggregates of people. It is
worth noting, however, that the cluster identified by the study
18
extends well beyond Long Island. The area of the cluster does not
share proximity to any single source of industrial pollution. Many
activists have pointed to the Long Island aquifer, which is the
source of drinking water for all Long Island residents, as a potential
risk because of seepage of chemicals into the aquifer from the
ground. The identified cluster, however, includes many sources of
drinking water other than the Long Island aquifer, suggesting that
water contamination is likely not the reason for the increased risk.
Looking at these data, the researchers conclude that the high
breast cancer risk is likely due to one of the factors that they were
not able to incorporate in their study. “The several known and
hypothesized risk factors for which we could not adjust that may
explain the detected cluster are most notably age at first birth, age at
menarche, age at menopause, breastfeeding, genetic mutations, and
environmental factors,” they wrote. They group “known and
hypothesized” risk factors together, but it is important to differentiate between the two—environmental factors are a “hypothesized”
source of risk. For example, the author of a paper entitled
“Epidemiology of breast cancer: an environmental disease?”
explains that the goal of the paper is to consider “potentially controversial conditions which could in the future be recognized as new
risk factors.”34
An in-depth study of the two most frequently blamed chemicals,
the pesticide DDT and a now-banned industrial insulator called
PCBs, investigated Long Island women and concluded that
increased risk of breast cancer does not appear to be associated with
past exposure to these compounds.35 Further, the study’s authors
found that “breast cancer risk among Long Island residents was not
elevated compared with residents of the adjacent New York City
borough of Queens.” 36 Some smaller-scale studies completed in the
early 1990s had indicated that PCBs might be a cancer risk, but
these results were not confirmed by this LIBCSP study.
The investigation mandated by the 1993 law funded five separate
large U.S. studies of women located mainly in the northeastern
U.S., to evaluate the association of blood and serum levels of DDE
(a chemical produced as DDT breaks down in the environment) and
PCBs with breast cancer risk. In a review of these five studies published in the Journal of the NCI, researchers conclude that “combined evidence does not support an association of breast cancer risk
with plasma/serum concentrations of PCBs or DDE. Exposure to
these compounds, as measured in adult women, is unlikely to
19
Cancer Clusters:
Findings and Feelings
explain the high rates of breast cancer experienced in the northeastern United States.”37
Another area which the LIBCSP is investigating in response to
the congressional mandate is the possibility of carcinogenic effects
from electromagnetic fields. A research group at the State
University of New York at Stony Brook conducted a review of
occupational studies evaluating correlation between women’s workplace exposure to electromagnetic fields and the incidence of breast
cancer. They report that eleven such studies have been conducted.
Six of the studies found no association between cancer and workplace exposure, three of the studies found an association for the
whole group studied, and two of the studies revealed associations
only in subgroups of the population under study.38 These studies
show a fairly typical distribution of positives and negatives that are
found when there is no association. When an association represents
a causative relation, studies are much more consistently positive.
The LIBCSP’s largest, definitive report has yet to be published.
Based on the findings released thus far, however, it seems that the
political impulse to tie breast cancer on Long Island to industrial
pollution is not being validated by science.
Conclusion
Based on the data available today, there is no firm evidence that
traces of industrial pollution diffused in the environment are causing cancer clusters. This could change as the issue receives continuing scientific scrutiny. For now, however, there is a substantial gap
between scientific findings on this issue and public perceptions.
Science continues to indicate that the primary sources of cancer risk
are obesity, diet, exercise, smoking, alcohol, sun exposure, occupational chemical exposure, genetic familial cancer syndromes and
susceptibility risk factors such as infectious agents—and not environmental chemical exposure. Beyond these, chance (random case
clustering) is a major predictor of perceived cancer clustering.
Citizens, journalists, and public officials share in the responsibility
for accurate and fact-based discussion.
20
A Checklist: ACSH Recommends
For members of the community:
•
•
•
Be skeptical. “Common sense” does not trump science in this
realm.
Know your sources: Activists and experts often disagree when it
comes to cancer clusters.
Remember the bull’s-eye effect: Check for bias in the way statistics are organized or calculated.
For journalists:
•
•
•
Help consumers differentiate among suspected clusters in which
incidence is actually not increased, clusters in which incidence
is increased, and clusters for which a cause other than chance
has been identified or is at least strongly suspected on good scientific grounds.
Put community concern in context—use information like that
contained in this report to ensure that the science of cancer clusters gets covered along with the human side of the issue.
Clearly distinguish between helpful actions that people can take
to reduce cancer risk—frequent checks for early detection, a
healthy diet and exercise, and in some cases chemoprevention—
from steps like filtering the water that are not proven ways of
reducing cancer risk.
For politicians:
•
•
•
Focus on measures that are both popular and proven—like
mammograms and chemoprevention when appropriate for
breast cancer, and frank but well-informed discussion of confirmed lifestyle risks for all cancers.
Explain the facts about environmental clusters—we may have
nothing to fear but fear itself.
Maximize the efficacy of cancer research and epidemiology
dollars by allowing public health officials and scientists to
direct and manage the details of research efforts.
21
Cancer Clusters:
Findings and Feelings
References
1. Testimony of Robert Hoover, M.D., Sc.D., Dir. Epidemiology
and Biostatistics Program, NCI, to the Senate Cancer
Coalition, U.S. Senate, June 5, 2001.
2. Typically, the statistical threshold p<0.05 is used.
3. Caldwell, G.G., Twenty-two years of cancer clusters investigations at the Centers for Disease Control, Am J Epidemiol
1990;132:S43-S47.
4. Schottenfeld D. and Fraumeni J. F. Cancer Epidemiology and
Prevention, W. B. Saunders and Company, 1982.
5. p. 305 in Cancer Epidemiology and Prevention.
6. Lewis, R., Vinyl Chloride and Polyvinyl Chloride, Occup Med
1999 Oct-Dec;14(4):719-42.
7. Bender. A.P., et al., Appropriate public health responses to
clusters: the art of being responsibly responsive, Am J
Epidemiol 1990;1322:S48-S52.
8. Testimony of David W. Fleming, M.D. Deputy Director for
Science and Public Health, Centers for Disease Control and
Prevention, and Deputy Administrator, Agency for Toxic
Substance and Disease Registry, Department of Health and
Human Services, Before the Senate Cancer Coalition, U.S.
Senate, June 5, 2001.
9. Schottenfeld D. and Fraumeni J. F. Cancer Epidemiology and
Prevention 2nd Edition, Oxford University Press, 1996
Schottenfeld and Fraumeni, 2nd ed., p. 414.
10. Schottenfeld and Fraumeni, 2nd ed. ch. 20—“Water
Pollution”.
11. Fleming testimony (ibid.).
12. Cancer Facts & Figures 2001, American Cancer Society.
22
13. Kreiger, N. and D. Reynolds, An investigation of two apparent
cancer clusters in one community, Revue Canadienne Du Santé
Publique, 83:2:116-119.
14. Carol Gorga Williams. “Probers cast wider net for childhood
cancer victims.” Asbury Park Press, 4/19/96.
15. Fumento, Michael. “’Erin Brockovich’ Exposed.” The Wall
Street Journal, March 28, 2000.
16. Ibid.
17. “TRACKING DOWN A CAUSE; Lawmakers pledge fund to
better assess child cancer cluster.” Asbury Park Press. 3/19/96.
18. Terry Dube of Lakehurst, NJ as quoted in “Cancer-fearing
families rally; authorities advice patience.” Asbury Park Press,
3/16/96.
19. “State says Toms River water supply is OK now, but studies
continue.” AP Newswire. 11/16/99.
20. TRACKING DOWN A CAUSE, ibid.
21. Ibid.
22. Press Release, Congressman Jim Saxton. June 23, 2000.
<http://www.house.gov/saxton/pr62300.htm>.
23. Case-control Study of Childhood Cancers in Dover Township
(Ocean County), New Jersey. < http://www.state.nj.us/health/
eoh/hhazweb/dovertwp.htm>.
24. “Little Reassurance for Toms River Residents About Causes of
Cancers” Iver Peterson, New York Times, December 19, 2001.
25. “Toms River Still Asking A Question: 'Why Us?'” Iver
Peterson, New York Times, December 21, 2001.
26. Testimony of Randall L. Todd, DrPH, State Epidemiologist,
Nevada State Health Division, before the Senate Committee on
Environment and Public Works, June 11, 2001.
27. <http://www.1in9.org/mile.htm>.
23
Cancer Clusters:
Findings and Feelings
28. “LI Topic / Should we trust the government to see if our land
is safe?” Geri Barish. Newsday. Feb. 7, 1999.
29. “Long Island cancer rate prompts debate, congressional hearing.” AP Newswire. June 10, 2001.
30. Public law 103-43, June 10, 1993, from http://epi.grants.cancer.gov/LIBCSP/PublicLaw.html.
31. Davis, Devra Lee et. al. “Waiting for Science can Cost Lives.”
Newsday. December 31, 2000.
32. http://epi.grants.cancer.gov/LIBCSP/.
33. Kulldorff M. et al., Breast Cancer Clusters in the Northeast
United States: A Geographic Analysis, Am J Epidemiol
1997;146:161-170.
34. Sasco A.J., Epidemiology of breast cancer: an environmental
disease?, APMIS 2001 May;109(5):321-329.
35. Stellman, S.D., et al., Breast cancer risk in relation to adipose
concentrations of organochloride pesticides and polychlorinated biphenyls in Long Island, New York, Cancer Epidemiol
Biomarkers Prev 2000 Nov;9(11):1241-9.
36. ibid.
37. Laden F., et al., 1,1-Dichloro-2,2-bis(p-chlorophenyl)ethylene
and Polychlorinated Biphenyls and Breast Cancer: Combined
Analysis of Five U.S. Studies, J National Cancer Inst
2001;93:768-76.
38. Caplan L.S., et al., Breast cancer and electromagnetic fields—
a review. Ann Epidemiol. 2000 Jan;10(1):31-44.
24
AC SH
E XEC UT IVE
S TA F F
Elizabeth M. Whelan, Sc.D., M.P.H.
President
A CSH
BOA RD
O F
DI REC TORS
Fredric M. Steinberg, M.D.
Thomas R. DeGregori, Ph.D.
Stephen S. Sternberg, M.D.
Chairman of the Board, ACSH
Hertfordshire, England
University of Houston
Memorial Sloan-Kettering Cancer Center
Terry L. Anderson, Ph.D., M.S.
Henry I. Miller, M.D.
Mark C. Taylor, M.D.
Hoover Institution
Physicians for a Smoke-Free Canada
A. Alan Moghissi, Ph.D.
Lorraine Thelian
Political Economy Research Center
Elissa P. Benedek, M.D.
University of Michigan
Norman E. Borlaug, Ph.D.
Institute for Regulatory Science
Ketchum Public Relations
John H. Moore, Ph.D., M.B.A.
Kimberly M. Thompson, Sc.D.
Grove City College
Harvard School of Public Health
Texas A&M University
Michael B. Bracken, Ph.D., M.P.H.
Yale University School of Medicine
Albert G. Nickel
Elizabeth M. Whelan, Sc.D., M.P.H.
Lyons lavey Nickel swift, inc.
American Council on Science and Health
Kenneth M. Prager, M.D.
Robert J. White, M.D., Ph.D.
Columbia College of Physicians and
Surgeons
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University of California
Taiwo K. Danmola, C.P.A.
Fredrick J. Stare, Ph.D., M.D.
Christine M. Bruhn, Ph.D.
Arthur Andersen llp
Harvard School of Public Health
A CS H
Ernest L. Abel, Ph.D.
BO ARD
OF
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AN D
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ADVISORS
C.S. Mott Center
Edward E. Burns, Ph.D.
Texas A&M University
Charles R. Curtis, Ph.D.
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University of California, Los
Angeles
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M.B.A.
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Stephen K. Epstein, M.D.,
M.P.P., FACEP
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American Society for Nutritional
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Ohio State University
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Hudson Institute
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University of California, Davis
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University of Massachusetts
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Medical College of Virginia
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C.Chem., DABT
GlobalTox International
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Alfred I. duPont Hospital for Children
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University of South Carolina
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Public Health Policy Advisory
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Michael A. Dubick, Ph.D.
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James R. Dunn, Ph.D.
Averill Park, NY
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Institute for Behavior and
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Future Beef Operations, L.L.C.
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Professional Nuclear Associates
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Quest Diagnostics Incorporated
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Medical College of Wisconsin
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Upper Black Eddy, PA
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Utah State University
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RAM Institute
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Yale University School of Medicine
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Daniel F. Farkas, Ph.D.,
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M.S., P.E.
Center
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IA
Houston, TX
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University of Florida
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Medical College of Wisconsin
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Fraud
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Health Education Foundation
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University
of
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AC SH
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David M. Klurfeld, Ph.D.
O F
SCI ENT IFI C
AND
POL ICY
John J. McKetta, Ph.D.
ADVISORS
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Wayne State University
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Yale School of Public Health
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Michael Kamrin, Ph.D.
Janet E. Macheledt, M.D.,
M.S., M.P.H.
International Center for
Toxicology and Medicine
Radiation Oncology Center
Osterholm, Michael T.,
Ph.D., M.P.H.
M. Alice Ottoboni, Ph.D.
Michigan State University
Houston, TX
Sparks, NV
John B. Kaneene,Ph.D.,
M.P.H., D.V.M.
Roger P. Maickel, Ph.D.
Michael W. Pariza, Ph.D.
Purdue University
University of Wisconsin, Madison
Michigan State University
Henry G. Manne, J.S.D.
Stuart Patton, Ph.D.
University of Michigan
University of Nebraska, Lincoln
Michael B. Shermer, Ph.D.
Skeptic Magazine
Sidney Shindell, M.D., LL.B.
Kathryn E. Kelly, Dr.P.H.
Earl G. Siegel, Pharm.D.
Judith A. Marlett, Ph.D., R.D. Mary Frances Picciano, Ph.D. University of Cincinnati Medical
George R. Kerr, M.D.
University of Texas, Houston
James R. Marshall, Ph.D.
Arizona Cancer Center
George A. Keyworth II, Ph.D. Margaret N. Maxey, Ph.D.
Progress and Freedom Foundation
University of Texas at Austin
Michael Kirsch, M.D.
Mary H. McGrath, M.D.,
M.P.H.
Highland Heights, OH
John C. Kirschman, Ph.D.
Loyola University Medical Center
Ronald E. Kleinman, M.D.
University of Saskatchewan
Emmaus, PA
Massachusetts General Hospital
University of Illinois, UrbanaChampaign
Thomas T. Poleman, Ph.D.
Cornell University
Charles Polk, Ph.D.
University of Rhode Island
Alan G. McHughen, D.Phil.
Charles Poole, M.P.H., Sc.D
James D. McKean, D.V.M.,
J.D.
Gary P. Posner, M.D.
Iowa State University
University of North Carolina
School of Public Health
Tampa, FL
Steven D. Wexner, M.D.
Cleveland Clinic Florida
Joel Elliot White, M.D.,
F.A.C.R.
John Muir Comprehensive
Cancer Center
Carol Whitlock, Ph.D., R.D.
Burke, VA
Mark L. Willenbring, M.D.
Veterans Affairs Medical Center
Lloyd D. Witter, Ph.D.
Timothy Dukes Phillips, Ph.D.
David R. Pike, Ph.D.
University of California at SanFrancisco
Sarah Short, Ph.D., Ed.D.,
R.D.
Karl Maramorosch, Ph.D.
University of Wisconsin, Madison
Janet S. Weiss, M.D.
Carl K. Winter, Ph.D.
John G. Keller, Ph.D.
Delta Toxicology
Miles Weinberger, M.D.
Medical College of Wisconsin
University of Illinois, UrbanaChampaign
Texas A&M University
George Washington University
University of Iowa Hospitals and
Clinics
Christopher F. Wilkinson,
Ph.D.
University of California, San
Diego
Pennsylvania State University
Donald M. Watkin, M.D.,
M.P.H., F.A.C.P.
Rochester Institute of Technology
George Mason University Law
School
Rutgers University, Cook College
Willard J. Visek, M.D., Ph.D.
University of Illinois College of
Medicine
Reason Public Policy Institute
Pennsylvania State University
Olney, MD
Center
Shashi B. Verma, Ph.D.
University of Nebraska, Lincoln
Patrick J. Shea, Ph.D.
Syracuse University
Philip G. Keeney, Ph.D.
Sita R. Tatini, Ph.D.
University of Minnesota
Steve L. Taylor, Ph.D.
Editor, Epidemiology
Environmental Medicine, Inc.
Loma Linda University
Gaithersburg, MD
Topeka, KS
Steven T. Rosen, M.D.
Steven P. Novella, M.D.
Oregon State University
Michael M. Sveda, Ph.D.
Glenn Swogger, Jr., M.D.
Health Education Enterprises, Inc.
Woodhaven, NY
Daryl Lund, Ph.D.
Potomac, MD
Colorado State University
Ian C. Munro, F.A.T.S.,
Ph.D., FRCPath
University of Wisconsin
University of Toronto, Canada
Rudolph J. Jaeger, Ph.D.
C. Joseph Stetler, Esq.
David B. Roll, Ph.D.
Stephen J. Moss, D.D.S., M.S. Dale R. Romsos, Ph.D.
Palo Alto, CA
William M. Lunch, Ph.D.
University of California, Davis
California Cancer Registry
University of Western Ontario
Paul J. Lioy, Ph.D.
Alejandro R. Jadad, M.D.,
D.Phil., F.R.C.P.C.
Pennsylvania State University
Judith S. Stern, Sc.D., R.D.
W. K. C. Morgan, M.D.
Sarasota, FL
Miami, FL
University of Texas, Houston
Robert D. Steele, Ph.D.
Dartmouth Medical School
Oklahoma State University
Frank C. Lu, M.D., BCFE
Ronald T. Stanko, M.D.
University of Pittsburgh Medical
Center
Bill D. Roebuck, Ph.D., D.A.B.T. Martha Barnes Stone, Ph.D.
Gordon W. Newell, Ph.D.,
M.S.,F.-A.T.S.
University of California, Los
Angeles
Robert A. Squire, D.V.M.,
Ph.D.
Baltimore, MD
John W. Morgan, Dr.P.H.
University of Kansas School of
Medicine
William M. London, Ed.D.,
M.P.H.
Leonard T. Sperry, M.D., Ph.D.
R.T. Ravenholt, M.D., M.P.H. James H. Steele, D.V.M.,
Population Health Imperatives
M.P.H.
Russel J. Reiter, Ph.D.
Floy Lilley, J.D.
Fort Lee, NJ
Rutgers State University of New
Jersey
Roy F. Spalding, Ph.D.
Kary D. Presten
David Kritchevsky, Ph.D.
University of Wisconsin, Madison
Myron Solberg, Ph.D.
A. J. Siedler, Ph.D.
Center
University of California, Davis
University of Illinois, UrbanaChampaign
James J. Worman, Ph.D.
Rochester Institute of Technology
Russell S. Worrall, O.D.
University of California, Berkeley
Lee M. Silver, Ph.D.
Panayiotis M. Zavos, Ph.D.,
Ed.S.
Michael S. Simon, M.D.,
M.P.H.
Steven H. Zeisel, M.D., Ph.D.
S. Fred Singer, Ph.D.
University of Iowa
Princeton University
Wayne State University
Science & Environmental Policy
Project
Robert B. Sklaroff, M.D.
Elkins Park, PA
Gary C. Smith, Ph.D.
Colorado State University
The opinions expressed in ACSH publications do not necessarily represent the views of all ACSH Directors and Advisors.
ACSH Directors and Advisors serve without compensation.
University of Kentucky
The University of North Carolina
Ekhard E. Ziegler, M.D.
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